Top DJ discusses life with epilepsy

Top DJ discusses life with epilepsy

By Deborah Condon

Epilepsy affects around 40,000 people
in Ireland, making it a fairly common condition. Yet stigma and in some
cases, fear and embarrassment, still surround it. Often, those affected
worry they will not be able to lead a 'normal' life. In an effort to combat
this misconception, the Irish Epilepsy Association, Brainwave, launched
a search for a well-known Irish patron last year. Top 2FM DJ, Rick O'Shea,
immediately stepped up to the mark.

"I was 16 when I had my first seizure.
It was Christmas Day. I was playing a board game with my brother when I
stood up, got a funny look on my face and fell down, taking the tree with
me”, Rick, who is now in his 30s, tells irishhealth.com.

The next thing he remembered was waking
up in an ambulance on the way to St James's Hospital. After the second
or third seizure, the neurologist confirmed he had epilepsy, something
he admits terrified him and his family.

"I was terrified of how it would
affect the rest of my life. Was it going to change everything? But I decided
it
wasn't. You have to make decisions as if you do not have epilepsy. You
can only deal with seizures when you get them", he says.

After his diagnosis and for the rest of
his teens, Rick had seizures every six months to a year. During his 20s,
he did experience a seizure-free period of six to seven years. However
for the last few years, he has been having a seizure every 18 - 24 months.

2FM DJ, Rick O'Shea

"My last seizure was in October 2004.
Some people have very specific triggers, such as strobe lighting or stress.
However I've had loads of tests done and doctors cannot find what triggers
my seizures", he explains.

Rick has been on anti-epileptic drugs
(AEDs) 'pretty much ever since' he was diagnosed. When he was 19 or 20,
doctors tried taking him off the drugs, but this did not work. While acknowledging
that medication may not suit everybody, he is firmly of the view that in
his case, if AEDs helps him stay seizure-free, he is 'happy to take them'.

Rick has always been open about the fact
that he has epilepsy. When he went back to school after his diagnosis,
the school principal was obviously told, but he also told his friends.

In college, he had a seizure in front
of a group of friends in the library and admits this was probably 'terrifying
for them' as they had never seen a seizure before. Although he points out
that while he has had many of them, he has never actually seen anyone having
a
seizure either!

He does consider himself to be lucky
given the relatively long time between
his
seizures,
as some people have them every few weeks or even every day.

Rick, who has two young kids, is now a
successful DJ. He currently hosts the weeknight 10pm to midnight slot on
2FM. He has always been upfront with his employers when it came to having
epilepsy and thankfully, they have always been 'understanding and rational'.
He has only ever had one seizure in work.

However he acknowledges that the situation
is probably different for people who work, for example, nine to five in
an office.

"That is one of the common questions
Brainwave get asked by people; what should I do? Should I tell my employer?",
he points out.

Rick has an eight-year-old son and a two-year-old
daughter. He said he has thought about whether they will develop epilepsy,
'especially if they had it worse than me'. However while some studies have
suggested a hereditary link, there is no conclusive evidence that this
is the case.

"My children have as much or as little
a chance as anyone's of developing epilepsy", he said.

While his two-year-old is too young to
understand, his son knows all about his condition and did actually see
his Dad having a seizure.

"He was only four though and he doesn't
remember it, but he knows what to do if I have one in front of him again",
Rick explains.

One thing that has been affected by epilepsy
is driving. A person has to be seizure-free for a minimum of 12 months
before they will be allowed to drive a vehicle. After 12 months, a neurologist
will certify that they can drive. However as Rick's seizures tend to come
every 18 - 24 months, he has had to give up driving a number of times.

"I'm still on a provisional licence
as I've never got as far as the test!", he says.

Rick's advice to anyone with epilepsy
is to use the many resources provided by Brainwave. If you know your triggers
meanwhile, try to avoid them. Although this can be easier said than done,
due to the stigma that surrounds the condition.

"Stress can be a trigger factor.
However some people may feel they have to hide the condition, which can
make them stressed out, triggering the seizure. It's a vicious cycle",
he explains.

He believes people should try to be open
and honest about the condition. They can also do practical things such
as showing family and friends what to expect and what to do should a seizure
take place.

To everyone else, he simply asks that
they be 'as understanding and positive about epilepsy as they can'.

Comments

jm78 - 06/04/2006 14:32

I have a 7yr old daughter who was diagnosed with epilepsy about 1nd half yrs ago-- she had 1 grand mal seizure and some partial seizures within 6 months of starting on her medication, but since she has been seizure free with the exception of bouts of staring which i have bin advised are a part of epilepsy. on the comment Rik made about it being hereditary- as far back as I can trace there are no occurrences of epilepsy on either side of the family but thats not to say that its not the case.It has changed my daughters life slightly in that I've refused her going to concerts and wont let her partake in strenuous activities for fear of her having a seizure as in her case they appear to be brought on mostly by tiredness.We are open about her epilepsy and dont feel it something that needs to be hidden. they say that it shouldnt change your life but in ways it does!!!

Anonymous
- 06/04/2006 16:00

I was diagnosed with epilepsy at age 21. I have had occassional grand mal seizures (while off meds), and get seizures in my sleep about once a month. I find tiredness and stress are major factor with me, but I agree it is all about the way you deal with it. If you are positive and do not let it control your life you will get along fine. I just find I need a lot of sleep to prevent seizures.

Brainwaver - 06/04/2006 17:16

jm78 - I understand your oncerns completely about your daughter but you should be wary of wrapping her up in too much cotton wool. She needs to be able to mix socially with children of her own age as much as possible so that she won't feel sidelined by her condition. She also may rebel against you if she feels you've become too restrictive, something that can easily happen. Discuss this with your GP/specialist and try to strike a happy medium. It'll save tears later.

Mary - 07/04/2006 09:01

Jm78, I have to agree with Brainwaver, altho' of course you want what's best for your daughter, takign part in sports and goign to concerts are an integral part of being young and as well as sport being vital to physical health, both are important for mental health as thy allow her to mix with her own peer groupm rather than her condition making her feel different all the time.

jm78 - 12/04/2006 11:08

tnx 4 the advice!! maybe i jus havent lived with the condition long enough-- suppose i'l learn tho-- unless of course she grows out of it which I believe happens regularly (heres hoping!!!)

De - 14/04/2006 08:58

My daughter has been diagnosed with epilepsy recently. She has been having absences about twice a day(lasting about 3 seconds) since she was 12 - she is now 15. I am having difficulty accepting the diagnosis and she has been having hoemeopathy and crano - sacral therapy since the beginning of the year without much change really. Tiredness is a trigger. We have decided not to start medication yet though we have had the prescription filled out. The side effects are worrying. Also, the consultant told us to make another appointment only after she had been taking the meds for 3 months. We feel a bit "locked out" of the medical side because of our reluctance to take medication. Am I being an irresponsible Mum? She is fairly oppinionated herself re meds, but I have been a huge influence in this.

Mary - 14/04/2006 11:56

De, I would be extremely suspicious of hoemeopathy and crano - sacral therapy for epilepsy (or anything else for that matter) as homeopathy has no proven scientific benefit.
The side effects my seems severe - as most side effects are for any meds but the fact is that most side effrects are very rae.
Also your daughter is not going to get the consultation which will help her without knowing how helpful the meds have been fter three months.

Brainwaver - 18/04/2006 12:20

De, I have to agree with Mary. most side effects are rare but they have to be listed by law which can make reading the leaflets a bit scary. COnsider which is the worse of the two options - I know I'd sooner take my chances with the meds than have to suffer all those seizures.

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